Re: I'm Mom of 18 yr old RSS girl

[Guest guest]

JoAnn,

Your story is so encouraging and promising for me as a mom to an RSS

2 year old boy. I am always so uplifted by the RSS adults stories,

and the parents with older children with RSS. It is so hard for me

right now. My little boy is tube fed, and I often wonder how long he

will be fed through a tube. And, I think he is so smart and I wonder

what the future holds for him. I think he has so much potential and

I want so much to be able to help him reach his highest dreams. It

really sounds like your daughter has some really good goals. It is

great that she is going to be a teacher. ) We need all the good

teachers we can get.

Thank you for sharing your story and I hope to see you post here more

often!

Jodi R.

's mommy

28 months old in 4 days! 18 lbs. 14 oz.

> 18 years ago I gave birth to a 4lb 4 oz baby girl- full term- by

> C-section. The docs said IUGR and placental difficiancy. We tested

her

> many times over the years and she was never a candidate for GH. She

> was 14lbs at 1 yr, 17lbs at 2yrs and 21lbs at 3 yrs... way under the

> normal growth pecentile however she had steady growth- until about

5th

> grade. She reached her full height potential at 4ft.6inches. Health

> wise she suffered from chronic ear infections, annual croup and

> lactose intolarance. Over the past few years we have also

discovered a

> kidney " issue " - not pin-pointed by the nephrologist or the

> hemotologist- which looks like added calcium in the blood, elevated

> platelet counts, and trace blood in the urine. Testing revealed a

> " malformed duct " in the kidney that may be the cause- or possibly it

> could be a hormone/calcium cause. She takes Prevacid OTC daily for

> her " big-time heartburn. " She had learning disabilities that were

> addressed through the school system (IEP)after I lobbied for the

> support. The school approved services all the way through her senior

> year after I got a doctors note to prove she had a medical

condition.

> This support was a GODSEND- I HIGHLY RECCOMEND that parents take the

> initiative to get their kids into the special ed. program in their

> schools. My Rochele received an extra set of books at home and an

> extra textbook in each of her classes so she didnt have to carry

those

> heavy books on her back. Along with the academic support- the

> emotional support that she received from the individualized

attention

> of a resource teacher gave her great confidence for success. She has

> since graduated HS and she is in college to become a teacher

herself.

> She sees eye to eye with kids and that makes for a natural

connection.

> Socially, Rochele was VERY POPULAR in school because of her size.

> Everyone knew her because she looked different. No one ever picked

on

> her or bullied her because she has an excellent sense of self-worth.

> God made her this way-and only He knows what blessings he has in

store

> for her - she walks everyday expecting God to use her- and He

does!

> She has struggled with her weight since 6th grade. Fat was condensed

> in the hips and lower back area. Because this made her look like she

> had and ENORMOUS rear end (size 11 jeans) this put great strain on

her

> lower back and ankles. She had liposuction in her senior year of

> school and they removed 9 lbs of fat from her lower back and hips.

> (above the buttock area). This made her appear much more

> proportionate. It was well worth the results- we never realized that

> she was NEVER able to sleep on her back- her entire life. now she

can

> lay flat on her back and she can run- things she couldn't do

before.

> She is now in a size 8/9 short jeans.

> Insurance did not cover the surgery although it was definately

health

> related. Nothing in literature connected it to RSS.

> Another thing that changed as she grew was that squeeky voice. She

no

> longer has it.

> i will send in her senior picture. She had all of the obvious RSS

> signs as a baby (triangle face, down-turned mouth, curved fingers,

> webbed toes, large forehead etc.) But boy oh boy did she grow from

an

> adorable little baby to a knock out young lady. Shes a living doll,

> even today.

> JoAnn-Mom of Rochele- 18yrs-RSS and 15 yrs-non-RSS

> By the way my email address is ATM795@a... not the yahoo address.

[Guest guest]

JoAnn,

Your story is so encouraging and promising for me as a mom to an RSS

2 year old boy. I am always so uplifted by the RSS adults stories,

and the parents with older children with RSS. It is so hard for me

right now. My little boy is tube fed, and I often wonder how long he

will be fed through a tube. And, I think he is so smart and I wonder

what the future holds for him. I think he has so much potential and

I want so much to be able to help him reach his highest dreams. It

really sounds like your daughter has some really good goals. It is

great that she is going to be a teacher. ) We need all the good

teachers we can get.

Thank you for sharing your story and I hope to see you post here more

often!

Jodi R.

's mommy

28 months old in 4 days! 18 lbs. 14 oz.

> 18 years ago I gave birth to a 4lb 4 oz baby girl- full term- by

> C-section. The docs said IUGR and placental difficiancy. We tested

her

> many times over the years and she was never a candidate for GH. She

> was 14lbs at 1 yr, 17lbs at 2yrs and 21lbs at 3 yrs... way under the

> normal growth pecentile however she had steady growth- until about

5th

> grade. She reached her full height potential at 4ft.6inches. Health

> wise she suffered from chronic ear infections, annual croup and

> lactose intolarance. Over the past few years we have also

discovered a

> kidney " issue " - not pin-pointed by the nephrologist or the

> hemotologist- which looks like added calcium in the blood, elevated

> platelet counts, and trace blood in the urine. Testing revealed a

> " malformed duct " in the kidney that may be the cause- or possibly it

> could be a hormone/calcium cause. She takes Prevacid OTC daily for

> her " big-time heartburn. " She had learning disabilities that were

> addressed through the school system (IEP)after I lobbied for the

> support. The school approved services all the way through her senior

> year after I got a doctors note to prove she had a medical

condition.

> This support was a GODSEND- I HIGHLY RECCOMEND that parents take the

> initiative to get their kids into the special ed. program in their

> schools. My Rochele received an extra set of books at home and an

> extra textbook in each of her classes so she didnt have to carry

those

> heavy books on her back. Along with the academic support- the

> emotional support that she received from the individualized

attention

> of a resource teacher gave her great confidence for success. She has

> since graduated HS and she is in college to become a teacher

herself.

> She sees eye to eye with kids and that makes for a natural

connection.

> Socially, Rochele was VERY POPULAR in school because of her size.

> Everyone knew her because she looked different. No one ever picked

on

> her or bullied her because she has an excellent sense of self-worth.

> God made her this way-and only He knows what blessings he has in

store

> for her - she walks everyday expecting God to use her- and He

does!

> She has struggled with her weight since 6th grade. Fat was condensed

> in the hips and lower back area. Because this made her look like she

> had and ENORMOUS rear end (size 11 jeans) this put great strain on

her

> lower back and ankles. She had liposuction in her senior year of

> school and they removed 9 lbs of fat from her lower back and hips.

> (above the buttock area). This made her appear much more

> proportionate. It was well worth the results- we never realized that

> she was NEVER able to sleep on her back- her entire life. now she

can

> lay flat on her back and she can run- things she couldn't do

before.

> She is now in a size 8/9 short jeans.

> Insurance did not cover the surgery although it was definately

health

> related. Nothing in literature connected it to RSS.

> Another thing that changed as she grew was that squeeky voice. She

no

> longer has it.

> i will send in her senior picture. She had all of the obvious RSS

> signs as a baby (triangle face, down-turned mouth, curved fingers,

> webbed toes, large forehead etc.) But boy oh boy did she grow from

an

> adorable little baby to a knock out young lady. Shes a living doll,

> even today.

> JoAnn-Mom of Rochele- 18yrs-RSS and 15 yrs-non-RSS

> By the way my email address is ATM795@a... not the yahoo address.

[Guest guest]

Hi, Joann. I love to hear from the parents of older RSS kids. I am

the mom of Max who is 16 and has RSS. (My 19 year old daughter

Jenna does not.) Max is about 5'1 " and weighs 104 pounds. Weight

gain has never been a problem for him - if you are talking about too

much. His problem has been putting it on and keeping it on! Now if

only the rest of the family had that problem....

This is the first school year that I can remember where Max has had

a smooth start and is truly happy. He likes his teachers, gets

along well with his peers and is moving along nicely. He does have

learning disabilities, but he has learned to use his personality to

try to overcome them. He takes meds for anxiety, dysmotility and

ADD and Tourette Syndrome, but even they seem to be working now.

It's been a long haul with him.

I hope that you continue to post and share stories and info about

your daughter. We don't hear too often from parents of older RSS

kids. It's great to hear from you.

Jodi Z.

[Guest guest]

JoAnn,

Thanks you for sharing Rochele's story. It is always nice to hear from parents

of older RSS

children and inspiring when they have successes in life.

Kim C.

[Guest guest]

JoAnn,

Thanks you for sharing Rochele's story. It is always nice to hear from parents

of older RSS

children and inspiring when they have successes in life.

Kim C.

[Guest guest]

Hi JoAnn-

Welcome to the board! I'm a 38y/o woman with RSS, who, like

Rochele, did not have treatment in childhood. I'm a whopping

4'6.75 " and, for better or for worse, am told that I'm cute as a

button (being cute gets old...but I make sure to have a mouth like a

sailor whenever possible, to make up for it <wink>).

If Rochele would like to join our board for RSS Adults, please let

her know that we're over on RSS-People. She'll need to " request " to

have membership, but Hillary and/or Steph (the co-moderators) will

take cae of that ASAP.

-Sharon-

Just an RSS kid who grew up

(who has had protein in her urine since at least college and

possibly trace blood, but every test comes out negative for anything

major and I'm asymptomatic so we just leave it alone)

[Guest guest]

HEllo,

Yes it seems that the kidney thing is related to RSS however it is usually not

treated because they are asympomatic. Last month however Rochele developed a

kidney infection right after she started dorm life- and needed to take

antibiotics. I hope that is not something that will start to show up more often

now. According to what I foundd on the internet it did say that once you get

them you will get them more frrequently and they can become very serious- so she

will have to watch it. The nephrologist did not choose to treat her for anything

else- just to watch her periodically. I have two daughters, Rochele and

15. is not RSS, and actually she is tall, slender, a cheerleader. I often

say that " my big one is my little one and my little one is my big one " .

has one of those knock-out bodies that girls who work out everyday have. I

think sibling rivalry could have really been a problem but I am lucky that they

really respect each other and see only the best in each other.

We live in Kansas and Rochele goes to Emporia State University.

Where are you from?

Joann

..respehttp://webmail.aol.com/msgview.adp?folder=SU5CT1g= & uid=9732059

Re: I'm Mom of 18 yr old RSS girlct each other and see the best

in each other.